Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here...need Advice!


Sunshine79

Recommended Posts

rosetapper23 Explorer

Looking at your list of symptoms, I notice several that I had a particularly hard time with--especially the paresthesia, muscle pain, and bruising. You should definitely get your B12 checked if it wasn't, because it can be responsible for paresthesia, numbness, and tingling in your feet and hands.

As for the muscle pain and bruising, I'm sure many people on this forum have ideas. I can only tell you what worked for me. Of course, easy bruising can be related to low Vitamin K or iron anemia, but there can be other causes. I read a book about four years ago entitled, "The Hidden Story of Cancer," since I'd had breast cancer. The book discussed how low oxygen levels in our cells is the root cause of cancer (which is an accepted theory in medical school these days, even though it was first discovered back in 1939). The author, Brian Peskin, claimed that by taking a particular ratio of Parent Essential Oils (Omega 6 to Omega 3), a person's cellular oxygen level would rise. He also maintained that, because of this high cellular oxygenation, one's muscles would no longer be painful after exercise and would recuperate faster. Also, bruising would lessen...and he claimed that the oils would also protect skin from burning. I thought that these claims were probably not completely true, but I was willing to try the mix of oils to see if I could keep the cancer at bay. Well, let me tell you--I'm a complete believer now! As long as I take the recommended dosage of oils in my smoothie every day, my muscles no longer hurt and I can exercise, jog, and do heavy gardening with absolutely NO PAIN afterwards. My husband and mother also take the oils, and all three of us have had serious falls in the past few years, and we were all stunned to discover that we ended up with no bruises. My knee was extremely swollen after falling down the stairs (from the top stair all the way to the bottom, hitting my knees, elbows and head repeatedly over and over), but it never colored, nor did my other painful areas end up with bruises. The same thing happened to both my husband and mother--they were completely floored by the absence of bruises after their hard falls. Yeah, I guess we're a family of klutzes, but that's for another posting. As for sunburns, I no longer get them. I haven't used sunscreen in four years because I don't even get a light blush from spending hours in the sun here in California. I visited my daughter in Australia last year, which is near the equator, and she warned me to slather on sunscreen before going on a four-hour coastal walk along the beaches, but I refused. She slathered on the stuff even though she's dark complected like her father, and after the walk, SHE had a sunburn and I was not even faintly burned. And, no, I wasn't wearing a hat.

So, if you'd like to try the ratio of oils to help your muscles (and I'm not promising that it will because your case may be different from mine, but it's a natural and inexpensive remedy that might be worth trying), all you have to do is mix 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of either organic safflower oil or grapeseed oil into a glass of juice or a smoothie. If you add it to a smoothie, add it AFTER you pour it into the glass; otherwise, it'll make your blender sticky and difficult to clean. The ratio you should take is between 1:1 and 2.5:1 Omega 6s to Omega 3s. The oils I've suggested will do just that--without reading the book, you could end up taking the wrong oils and that's why I've listed them for you so that you'll take the right ratio.

Good luck...and if you end up taking the oils and feel relief, please post again and share your success. I wish more people with celiac knew of this simple remedy for some of their symptoms.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Poppi Enthusiast

Yep, there's a big difference. I don't understand WHY they need to put gluten in some foods made in US but not Canada and vice versa. I see that your list has tomato soup. If I'm ever in Canada I might have to buy some tomato soup because I miss Campbell's tomato soup. Last summer I made my own tomato soup with roasted tomatoes fresh from my garden and it was wonderful! But I still miss Campbell's which was the soup I grew up on. I just console myself by thinking that it probably would taste bad to me now since I haven't eaten canned soup for almost a year (I had some Progresso back when I could do dairy and it was gross. I still have some Progresso soup in my huricane emergency box but my hubby will have to eat it).

I'm at a loss as to why the regular condensed tomato soup has gluten but the condensed tomato soup with herbs added is gluten free. How annoying.

T.H. Community Regular

What about vitamin D,B12,magnesium ,potassium, iron levels??

OMG, yes! He didn't check for vitamin levels at ALL? *long, extended bout of disgusted cursing over ignorant doctors*

Just....grrrr!

Re: everyone going gluten free. If you eat a lot of processed foods and you are looking for replacements for these, yes, it will be expensive. If you go to whole foods, then it's not, but it's more work for the cook, obviously.

However, all your kids should be tested for this disease now, too. And your siblings. And your parents. They are in a MUCH higher risk category for this. With a 1st degree relative having celiac disease, their chances are 1 in 22 rather than the 1 in 130 of the general population. It's recommended that they all be tested every few years for this, as well, as the disease can trigger at any time.

And if the doc didn't recommend this, then once again he wins the 'ignoramus' award. <_<

With my family, my father was diagnosed and no one ever mentioned to test everyone else. 8 years later, as I'm getting sicker and sicker (without any gut symptoms), I get diagnosed because I asked for the test. And when we found out I had it too, we tested everyone else. My brother and my daughter came back positive, and the other child had a negative test, but when the whole house went gluten free, suddenly symptoms he had suddenly disappeared.

My daughter's only really noticeable symptoms were periodic exhaustion, a little insomnia, and she was a pretty emotional kid, sometimes bordering on depression. My son's symptoms were a toddler melon-belly that lasted past toddlerhood, short stature, and anger issues.

Definitely worth getting the tests done.

Sunshine79 Rookie

Thank you rosetapper23! I will definitely try the oils; just made me a list!

I am calling my pediatrician today to ask about getting my boys tested. I pray that none of them have it! Thanks for the advice!

I go to my family doctor tomorrow and I really hope I don

rosetapper23 Explorer

I'm glad you're going to try the oils--I think you'll feel a lot better. If you can't find organic safflower oil or grapeseed oil, I've found that I still get benefits from the brands that aren't organic. They should be cold-pressed, though. Also, it's important to know that organic oils need to be refrigerated.

As for tests, you might ask your doctor to throw in a thyroid test for good measure. Many of us have thyroid issues, and fatigue and muscle soreness can be the result.

Good luck to you! And please let us know how you're doing, okay?

Sunshine79 Rookie

I went to my regular family doctor. He really isn't a doctor at all and certaintly not a GI doctor; he is a PA! He is awesome! He took his time and explained things to me. He told me I was definitely not getting enough carbs and that was helping to make me feel worse! He told me to eat potatoes. He also had me get more labs drawn to check my iron, B12 and Ferritin.

My B12 is 311. Some things I read this is ok and some it is pretty low? Also my ferritin is 22? Seems low but I am definitely not the expert! Can anyone clarify this for me? (I haven't talked to him about it yet; I got the results before he did)

My iron is alright at 109!

Thanks a bunch guys!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.